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seattle chris

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Everything posted by seattle chris

  1. The day my severe symptoms started was after an evening of drinking. In the weeks leading up to this day, I had two teaser lightheaded spells. Both times I had a couple of drinks the prior evening. Since then, I have had drinks twice. The first time I had two drinks without any noticeable effects (felt a little worse the next day but it is hard to determine whether it was due to the drinks or just random fluctuations in my day-to-day symptoms). The second time I felt super faint halfway through a glass of wine so I stopped. Since then I haven't had any alcoholic beverages but have longed for one many times.
  2. I had tinnitus three years ago but it went away after a year or so. It was only a minor nuisance for me.
  3. I did two TT tests. The was first at Cleveland Clinic and they had two intermediate stages of 30 and 45 degrees before moving me to 70 degrees. I had a similar experience with the IV - my arm felt sore as if the needle weren't smoothly inserted and thinking about this may have made my symptoms worse once upright (no isuprel though, only there for an emergency). I only lasted two minutes. Interestingly, there were two nurses and a doc on standby and the blood pressure monitors spooled every 30 minute or so. I did another at the Univ of Washington. They moved me directly from supine to 70 degrees without an intermediate phase. There was no IV and only one technician running the test. They had a continuous blood pressure monitor on my finger. They terminated the test after ten minutes at max tilt as my bp was down to 60/40. Upon recovery, there was no circulation in my (cold) hand so the monitor stopped recording. They had a neat blood pressure/heart rate chart that I could view afterwards.
  4. I was an avid runner until my symptoms started last year. I have a few times and had the same issues. The moderate running didn't give me any issues but once I stopped I felt dizzy and weak. I thought I might pass out but never did. I had the same experience during a stress test a couple of months ago, but the dizziness took about 5-10 minutes afterwards to arrive. I don't have POTS but have some kind of undiagnosed dysautonomia condition.
  5. Thanks for the helpful suggestions. I used to like Seahawks games but I went to one this year and it was hard to take three hours of yelling. Same with live music. Now I greatly prefer quiet situations. Badhbt - Strange coincidences. Perhaps there was something in the air in August around here. I was on atenolol during my TTT and afterwards the doc wished that I had not taken any meds for the preceding 24 hours.
  6. Does anyone have issues with the ability to talk loudly? If so, what is your diagnosis? At certain times of the day, it feels as if my head is rattling or vibrating when I talk at a normal volume so I have to speak softly. I assume it has to do with blood flow to the head. Given that I an new to the board, I will briefly introduce myself and tell my story. My first issues started last August, when I felt tremor type symptoms and subsequent lightheadedness. My wife took me to the ER where of course my vital signs were all normal. I made a trip to the Cleveland Clinic later that week (they even offered me same day appointments) where I was diagnosed with likely neurocardiogenic (pre)syncope. I had a tilt table test and was only able to take a few minutes upright so the results were non conclusive. I was short of breath afterwards and the doc sent me to the ER for the third time that week (I have resisted any further ER visit as there isn't much the staff has done for me other than inquire about anxiety problems). Since this time I have struggled with consistent lightheadedness, dizzy spells, headaches, head flashes (hard to describe some symptoms) and just a general overall crappy feeling. I frequently feel like I am going to pass out but haven't yet. An odd aspect of my condition is that my blood pressure has been normal to elevated in many cases when I have felt close to passing out. We went to a wedding in the mountains and I really struggled with the altitude as I felt tremors again followed by disorientation, as I felt as if I was in a stupor and even had trouble speaking clearly. I followed guidance from the Cleveland doctor and tried compression stockings and salt loading with no discernible results. I was previously diagnosed with sleep apena and was finally given a CPAP machine. I was able to use the machine at times, but my head is very sensitive since the symptoms started, and sometimes the (light) air pressure makes me feel like I am going to pass out so I stopped using. I recently saw a neurologist at the University of Washington who ordered a second tilt table test. This time, I was able to tolerate more than ten minutes standing. There wasn't much of a heart rate increase after standing (never went above the 60s) and my blood pressure continually dropped after a small increase, down to 60/40. The conclusion was that I have some kind of sympathetic dysfunction and a possible baroreceptor issue. Based on the results, I had a brain MRI and neck MRA that turned up negative. The doctor indicated that there was no evidence of multiple systems atrophy but it can't be definitively ruled out yet. I have been taking florinef for two plus months, which has raised my normally low blood pressure to borderline hypertension levels. Unfortunately, my symptoms have seemed to get worse. I have been taking atenolol my entire adult life for skipped heart beats/pvs. Use of the medication has been optional and has helped reduce symptoms for me but leaves me with a resting heart rate in the low 40s. The neurologist feels the next treatment steps are to 1) drop the atenolol by half and then eliminate after a few weeks to raise my heart rate (I started and my hr has increased but symptoms seem even worse) 2) increase salt loading to at least 9-10g daily and 3) start mididrone. The past five months have been incredibly frustrating as it feels like my entire body is falling apart. The day before I went to the ER with my first symptoms I had a vigorous bike ride around San Juan Island with several thousand feet of elevation gain. I was having a good summer and was participating in runs and triathlons, hiking, dining out (have had to end my beer and wine tasting hobbies), traveling and enjoying time with my wife and daughter. From one day to the next I felt like a different person and have become a couch potato. Despite the condition, I push myself to go to the gym as frequently as possible and lift weights and do light cardio activity as I don't want to completely decondition. Anyway, that is my story. Feel free to respond if you have also had the head vibrating issues or any other commentary regarding my condition. I look forward to sharing my experiences and learning from others on the board. It is good to have found people that share some of the same problems and find hope for better treatment options and ways to cope.
  7. I took mine the first week I had symptoms in August. I was only able to tolerate a few minutes and the outcome indicated that I probably have neurocardiogenic syncope. However, the blood pressure machine was spooling between the end of the test so the results weren't overly conclusive. Afterwards I was short of breath and seemed disoriented. I downed several cans of Gatorade and had several packs of crackers. The attending physician had me sent to the ER as I seemed out of it. The nurse grabbed an oxygen tank for me on the way to the ER and I started feeling better shortly afterwards. I felt better within an hour but had to sit there for several hours on a very busy day at the ER. I hope I don't have to take that test again..
  8. I started on .2 about a month ago but have had little to no improvement. I do have occasional nasty headaches that I presume is from the new medication. My cardiologist had indicated that we can increase the dose if there is no progress and my potassium level and blood pressure are normal. My potassium just tested as normal and my blood pressure has increased from 105/68 to 135/81 (still acceptable). I look forward to seeing if he still recommends an increase or an alternative approach such as a florinef, midodrine and beta blocker cocktail.
  9. My condition seems to vary hour-by-hour. I recently started taking florinef. One week later I felt better with no light headed spells (although replaced by headache/PVCs). Unfortunately the normal symptoms appeared the following day. It has been difficult to identify triggers for my symptoms. In any case, I have suspended most of my favorite activities (hiking, traveling, running, biking, evening cocktails, etc.) and become more accustomed to doing more reading and tv watching. I still make frequent gym visits if feeling acceptable but stick primarily to lifting weights, recumbent bike and elliptical (although I may feel a bit wobbly at times). Sleep has also been erratic and it is miserable when I obtain almost no sleep and have a busy day of work ahead. My issues started mid-August so I am still trying to figure out this condition.
  10. I have been dealing with PVCs my entire adult life, but they have been worse the two months I have had POTS related issues. The worst is during sleep when I have been frequently jolted awake by a series of sharp PVCs. When I did a Holter test two months ago, the results captured some PVCs and some runs from the top chamber (A Fib) that were associated with a light headed spell. I also did a recent stress test that captured some runs while I was running at higher speeds. Two cardiologists have indicated that the condition is benign and not something to be concerned about (hard not to though). Stress can make the symptoms worse, and it is tough to deal with these issues on top of the other POTS related problems. Hopefully your symptoms improve soon. FYI - My first post. It is reassuring to know that I am not the only one out there dealing with these crazy health issues.
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